Home Care, Chuck Schumer Rocks, Two new passings, MDA Gives Me An Award

First of all, Senator Chuck Schumer rocks.  Read this letter he wrote to the disabled community of New York endorsing the Health Care Reform Bill and the Community First Choice Act, which helps chronically ill and disabled people stay at home and avoid institutionalization [i.e. nursing homes].

I humbly announce that I am the recipient of the NYC MDA's ALS Division's Personal Achievement Award for this year.  I could very likely appear on the annual tri-state NY metropolitan TV broadcast of the MDA Labor Day Telethon.

May is ALS Awareness Month and for every day in May, MDA presents a picture of an ALS patient and his or her "story".  I have been selected from the NYC area to represent my region. Its called "Anyone's Life Story" and you can see my story on May 26, on the MDA/ALS Division's website.

My condolences to the families of Maria Pizarro and Julie McCourt, two wonderful ladies who attended the Beth Israel ALS Association support groups with their families, and who lost their fights with ALS on the same day -- Sunday, May 2.  I will miss them.  This disease is so cruel!! They both had loyal spouses who were involved in their care, and a group of friends and family members who were there to support them.  They had everything to live for.

Unfortunately, I probably will not be able to participate in the Ride For Life this year.  They don't have enough volunteers to walk with the riders, and they will not be able to provide van transport to family members and friends who get tired.  Just the segment from Washington Square Park to Columbia Presbyterian Hospital which is half of one day, is from W. 8th Street to W. 168th street. At 20 blocks = 1 mile, do the math -- 8 miles.  The friend I had who went with me every year, had recent knee surgery and can't walk that far.  Even if she could take a bus part of the way, they won't let me ride alone with no one at my side, which I could do but they won't allow it.  My high school friend, who teaches in the Lawrence School District wants me to do the Lido Beach to Lawrence segment, which her school is doing.  They are going to see if they can make special arrangements to transport me to the starting point and from the ending point.  In that case, she or someone from her school will walk beside me.  So we'll see.  In the meantime, is anyone in the New York area free on May 25th to walk the 8 miles alongside me from Washington Square to Columbia Presbyterian?  Just let me know.

Last call to join my team "Fern's Fighters" at the Walk to D'Feet ALS on May 15th along the Hudson River!!  You can walk, donate, or both.  Just go to the team webpage to sign up or donate on line. Also, they need volunteers at the Walk to direct traffic along the route, give out water, and to work at the start and end points.  Please contact me if you would like to do this.  And, remember, we plan to walk at the Long Island Walk to D'Feet ALS in Eisenhower Park on September 26.

And finally there is a really great site that explains the Consumer Directed [Community Care] Program and the history of how it came about.  For anyone who wants to know how they can keep a sick family member or friend out of a nursing home or other institution, and not have to deal with the restrictions and other nightmares of a home care agency, it is a must-read!

fernsfightersnyc10 Tiny URL for fernsfightersnyc10 Tiny URL for Greater New York Walk To Defeat ALS(TM):

Fern's Fighters
scroll down to the list of team members and use the link for "join team"

this is the link to sign up for the Walk to D'Feet ALS in NYC on Saturday, May 15th in Hudson River Park with my "Fern's Fighters" team. If Long Island is more convenient for you, we will be walking again on September 26, 2010 in Eisenhower Park.

The NYC walk is a one-way walk from the Village to the 50s, with celebration at the end-point. Unfortunately, there is no arranged transportation from end point to starting point. So, if you park your car at the starting point, you have to take public transportation back.

If you do the Long Island walk, it's a circular route, with a celebration back at the starting point, lots of food before the walk and hotdogs and lunch after the walk. Either walk is a lot of fun!! You can walk, donate, or both. And when you register, there is an area online to enter the names and addresses of your donors, who will then receive letters of acknowledgement from the ALS Association.

if you care to run a fundraiser before either walk, contact me and I will contact the ALS Association, who wants to assist with any fundraisers. If you are on Facebook [who isn't?], I suggest you become friends with ALS of GNY [Greater NY], and receive all the updates and tips from the Association.

Updates:Budget Cuts Affect Nassau Able-Ride and People With Disabilities in General

Sadly, I received notification that due to budget cuts, Nassau Able-Ride will no longer offer door-to-door service.  They are only required by law to provide service to people with disabilities along bus-routes, so that's what they are going to do.  This means that there are whole towns in Long Island that will not have Able-Ride paratransit service.  I'm happy to be living in New York City, where Access-a-Ride still offers door-to-door service.  It enabled me to go with my friend Judy to the kickoff party for the NYC Walk to D'Feet ALS at Yankee Stadium, and to the baby-naming of my friends' babies in Bayside, right on the border of Nassau and Queens.  But I would not have been able to go to my traditional New Years Eve party at my friend Nancy's house in Great Neck if not for the connection to Able-Ride.  This is very sad news for people with disabilities in Nassau County who don'thave use of a wheelchair van.  Budget cuts are hurting everyone.

Budget cuts could really hurt me in a big way too.  I am getting a visit from a nurse who works with NYC home care [CASA] next weekend, and she is going to evaluate me for continuation of home care.  Right now, I have two aides every day, on a "Split shift" of twelve hours each.  I am not likely to lose that, but they are not giving that arrangement to new applicants.  Rather they want to give everyone a "live-in" arrangement. In that plan, an aide lives in the whole day, usually for 3-4 days in a row. However, they are only paid for 14 hours.  This means that the aide is around in case there is an emergency in the night, but they are "off-duty" for eight hours.  They would rather work a 12-hour shift and go home, rather than have to hang out in a patient's house. I am sure that the aides I have now will refuse to do this.  So, if I am forced into a "live-in" aide situation, I am looking at a whole new set of aides.  That will not be fun, so I am going to have to convince this nurse that I need the two 12-hour shifts, without seeming so dependent that she will have to put me in a nursing facility.  It's a slippery slope, because I can do most things for myself, except I can't get into the kitchen, so the aides have to get everything for me.  So they would have to leave certain things within reach.  And since I don't really have proper sleeping arrangements, I would have to get an inflatable mattress at best.

On other important subjects, Lon Cohen says I can publish a book through Lulu with no cash outlay.  I was fitted for a new wheelchair, so I will get that in a few months. The new season of "The Tudors" has begun, and this season of "The Amazing Race" is coming to a conclusion.  I am going in May to see the "spasticity guru" as he is called by the Cornell ALS/MDA.  He is at the Hospital for Special Surgery.  The pollen count is also killing me, but when I feel I have to take an antihistamine, I can count on falling asleep for a few hours.  I love spring, but it is a double-edged sword for me.  I am comfortable inside with the A/C going.  I remember my beloved, now-retired, allergy doctor Sidney Rand telling me "Always take a vacation at the beach and never in the country.  Take hikes by the ocean on your days off, and never in the woods."  I do always feel best at the beach, far away from pollen and ragweed.  I always imagined myself retiring to a beach house to do my collages and my writing.  I will have to settle for an air-conditioned studio apartment in Queens. My biggest challenge is the TV soap operas in the background all day.  I can't help this, because the aides have to be amused too.

Good News About Local Hospital North Shore/LIJ Forest Hills, Wheelchair, Braces, etc

On Thursday, I had an emergency. My PEG feeding tube came out and my aide found herself holding it in her hand. I knew it wasn't a life-threatening occurrence, but she was rather freaked out. Since I had an empty stomach, no sickening liquid came pouring out, and I put the balloon back inside my belly and put surgical tape around it so it would stay in, and off we went to the Emergency Room of Forest Hills Hospital aka North Shore/Long Island Jewish Hospital. For twenty five years that I have been in Rego Park, this hospital has seen me throuh two sprained ankles, a slashed thumb and a broken toe pre-ALS, and a shattered wrist and subsequent surgery, as well as an injured foot post-ALS.  And most recently [I believe about 2 years ago], a horrendous experience when the tip of my PE tube came off.  At that time, it seemed nobody had ever seen a PEG tube before, and the attending doctor tried to pull it out, nearly killing me with pain.  I ended up going to Beth Israel Hospital, where my ALS team was at the time, and getting a new tip put on in about 2 minutes by a nurse in the GI Department.


So, I really didn't want to go to that local hospital, and called the doctor who did my PEG replacement last September, who was less than helpful.  He told me to "just go to any emergency room. I was not optimistic when I entered the ER, but they took me quickly and the attending doctor looked at my PE tube and said "Okay, we'll have to change this" and sent a nurse up to the GI department to get a tube.  He seemed rather surprised that I didn't have an extra one, and told me I should call my doctor and get two extra tubes to carry with me next time.  Anyway, the tube has a balloon on the end which, when inflated, holds in the tube. Occasionally, the balloon deflates and so the tube cannot stay in place anymore. In four years that I had the last tube, this never happened.  But I was told it could happen and that it wasn't life-threatening and had to be fixed as soon as possible.  Then, they x-rayed the site to make sure the tube was placed properly.  Within three hours of arriving at the ER, we were on our way home.  


I had been invited to attend a meeting of the consumer board of Concepts of Independence, the NYC agency that administers the CD-PAP [Consumer Directed Personal Assistant Program] through which my aides are paid.  This is a wonderful program by which I hire my own home health aides and we are not bound through the rules of an agency.  Early in my home care, I had terrible experiences with the Visiting Nurse Services, who would send different aides who didn't know me or my disease and I had some difficult days and nights. I also had a nurse who would come to visit and yell at me because I wasn't "getting better" and finally told me one day "we are having trouble finding aides to come to work with you, because they say the case is too hard".  Anyway, I was excited about being invited to this meeting, but I will have to postpone until the next time they meet.


My wheelchair is fixed and it is wonderful.  However, the MDA Cornell ALS Clinic wants to get me a whole new wheelchair, which usually is not approved before five years.  But they feel that with the progression of my disease, this wheelchair no longer meets my needs.  I'm not sure it ever completely did.  I also got a new bi-pap/ventilator combination called a Trilogy.  I went for my quarterly ALS clinic appointment a couple of weeks ago, and thanked Dr. Wu for speaking to my primary care doctor to get my blood pressure medication changed from Azor to Benicar HCT with a diuretic.  Now my feet look like feet again. I can even wear regular shoes sometimes.  The shoes for my new braces are a problem, however.  The podiatrist ordered shoes but they are too small, and he says I have to get custom-made shoes. These are going to be very expensive, and not covered by insurance. So I have to make payments on my credit cards until I have about $350 of credit to use.  I'm happy to say I can pay the bills with no problem, but I have so little left over that I am lucky to be able to buy groceries, let alone custom-made shoes.  Forget theater or baseball games this summer; that won't be a remote possibility.  I'll have very little pleasure or fun for a long while, but the shoes are a lot more important. 

Low-calorie diet could be deadly for Lou Gehrig's patients: study - Weight Management - C-Health

Low-calorie diet could be deadly for Lou Gehrig's patients: study - Weight Management - C-Health
OK so now what do I do? I'm damned if I do and I'm damned if I don't!! This article actually says I should follow a high-fat diet to save my motor neurons! It goes on to say that I should take in high calories to live longer! Go figure!!

Broken Machines Yield Difficult Times For a Person With ALS

I am dependent on machines and devices, which never seem to be functioning all at the same time.  I am very grateful to have these things, because without them, I would not be able to live in my home, and have what little independence I do have.


First, my wheelchair.  There was a time when there existed only manual push chairs, and every day and every minute that I buzz around in my motorized wheelchair -- either inside or outside -- I marvel at the fact that once I am in my wheelchair in the morning, I don't have to ask someone to push me from the desk to the other side of the room.  And I'm sure I would hardly be able to go outside, because I would have to convince someone to push me down the street. And, imagine life before the Americans with Disabilities Act was passed in 1990! An old-timer who has been disabled since the 1960s told me once "Even if we got out of the house, where would we go with a motorized wheelchair?  There were no curb cuts, and almost no businesses were wheelchair accessible"

When I found out my wheelchair initially cost $25,000 I was shocked.  In 2002, I bought a Hyundai Elantra for $12,000, so how could a wheelchair cost the same as two of my cars?  Wheelchairs are custom-made for the user, and refitted periodically for body changes and disease progression.  The modifications recently done on my wheelchair were carefully measured and customized for me.  So, when I had to give up my wheelchair last week for new tires and to repair two important features that had broken since December when I got my wheelchair back from the modifications, I dreaded the process of getting a loaner.  Antoinette from ALSA ordered me a loaner and then I was in the hands of the medical supply shop that runs ALSA's loan closet.  So they brought wheelchair #1, which was beautiful, but the driver who brought it couldn't get the seat-tilt working.  Seat-tilt is important for relieving pressure periodically several times throughout the 14-16 hours I am in the chair.  Moreover, as I slip forward, or when I sit down again after toileting, seat-tilt allows me to use gravity to get my butt back in the cushion.

So later that day, at Antonette's urging, they brought wheelchair #2 -- a beautiful Lexus of wheelchairs.  It has all the features, but it's not mine, and not made for me.  So I can't go in the street any distance with this chair, because the footrest is all wrong and my feet kind of lay there on their sides.  And the side-guides that keep my body straight in my own chair, are not in this chair.  So my body leans to one side and I have to keep leaning to the other side in a conscious effort to correct it.  All this is very uncomfortable, even though it is the best possible alternative.  Picture if cars were custom-made for our bodies and we had to drive a loaner.  So I am praying that I get my own wheelchair back again this week!!

ALS TDI (ALS Therapy Development Institute) :: Podcasts, Wheelchair Woes [yes, again].

ALS TDI (ALS Therapy Development Institute) :: Podcast

I love ALS TDI !!I think if anyone is going to find a cure or better treatments, it will be the scientists at ALS TDI. They work together with the ALS Association [ALSA], the Muscular Dystrophy Association [MDA], the Packard Center at Johns Hopkins, the Eleanor and Lou Gehrig Clinic and Motor Neuron Center at Columbia, and Massachusetts General, just to name a few.

You can now click on the link above to subscribe to ALS TDI's podcasts and be updated weekly on the wonderful work they do!!

Last Sunday, I tilted back in my wheelchair, as I always do a few times a day to take the pressure off my back, butt, and tailbone. But this time, I couldn't get the wheelchair to go down again. After about a half-hour of fiddling around -- turning the wheelchair on and off, pressing every button I could find -- it was time to call someone for advice. We knew that there was no way I and the aide [Ellita] could get me out of the wheelchair in that position, so I began to picture the drama of a firehouse call, and a bunch of nosy neighbors watching and giving their two-cents in English, Russian, and Chinese. I don't like drama and I prefer other kinds of attention, so I dreaded that scene. I had a business card from the wheelchair rep at the ALS clinic, so we called the poor guy on his cellphone. He was pretty nice, despite having his Sunday interrupted. He walked Ellita through some controls in the back with no success. Finally, Ellita found a wire that seemed to have a short, fiddled with it, and I got down. So now I can only tilt back just a little, which makes it hard for me to nap in the wheelchair.  Even more importantly, I use the tilt function to let gravity help me slide down and back so I can get my body properly seated. Not being able to do that easily and completely, is an inconvenience for sure. Antoinette from ALSA is coming to the rescue with a suitable loaner [go back to December to read about the loaner hell when the wheelchair company brought me what can only be described as a Barcalounger on wheels fitted for a 350-pound man]. I am waiting for the loaner to be delivered before I let the wheelchair go for repair. They are going to give me a new set of tires too while they have the chair. We are never bored at my house!!